Over the past week or so I've read quite a few details in different threads about what happens at an ADOS appointment on this forum (I include myself in that by the way as I've mentioned some things mentioned in my report that I found surprising and a "difficult read").
I've heard it said in the past that, whilst there is no explicit "secrecy" around ADOS and I certainly wasn't asked kindly not to discuss mine, that "they" don't like details being published - and I think there are good (for us) reasons for this. I think that if I had known in advance *exactly* what would happen and, more critically, *why*, then this would have created the risk that I would mask more (consciously or subconsciously) out of a desire to "do the right (i.e. NT) thing" and/or this would have led me to rehearse my behaviour beforehand and/or doubt the objectivity of the result (i.e. reflecting afterwards was I masking? Was I trying to display the autistic signs I had decided that I have?).
This would have led to more doubt about whether I had been diagnosed objectively via a gold standard test, and the little monster that says "there's nothing wrong with you & you're faking it" would have been bigger and louder.
As it was, because I knew very little about the specifics when I went for mine, I can look at my report and say "Yep, I didn't know they were looking for *that*, *then*, and my behaviour was 100% spontaneous and neither embellished nor masked, and it's 100% me".
What do you think? My leaning is that we should exercise caution in posting too many details here. Generalities of course are fine, but I think that discussing the specifics of the exercises and the reasons they exist entails the risks above.
The other thing that occurs to me is that, although i can see the rationale behind not revealing too much about it in advance, if, like me, you're left without any kind of report at the end of the process, some insight into what ADOS was looking for would help in identifying any blind spots in terms of what it was that flagged up the autism.
Yeah that’s what I was getting at with my reply. I think it’s really helpful for people that haven’t had detailed feedback. I don’t know if admin would lock certain areas of the forum or whether they’ve ever asked people don’t reveal much about the assessment? I can definitely see the rationale for not disclosing too much. But it’s good for those of us that have been through it and are seeking answers.
I’m still curious about the teeth brushing and would like to have seen what people in this forum did haha. I asked my friend and she started demonstrating clearly and asked me what I did first... my first thing was to say that my toothbrush did not being lying down on the sink it sits in its proper cradle. She said that’s probably a sign to them straight away that you like things to have their proper place, and she wouldn’t have noticed or cared she’d have just brushed her teeth and not given much commentary.
All of this information is readily available via Google so I don't think it'd be a useful use of admins time to create locked areas or asks people not to reveal details. If someone starts reading a post about the details of an assessment and they don't want to know them they can simply decide to stop and move onto another page
There are millions of autistic people in the world and we all present differently. From what I've read on these boards it's unclear how the assessor comes to their final decision. I was told 30 minutes into a 3 hour assessment she definitely thought I was autistic and would be writing this on the report- I don't think I'd even completed one of the tasks then but was made to go through the motions as she needed to complete the full assessment as part of her job.
Tiger1 said:You would consciously know what is expected because you already know the answer
firemonkey said:I think it would depend if a person was giving responses that seemed to be too stereotypically Aspergic/autisti
From the other thread, where the assessment is discussed in more detail its clear there isn't a right or wrong answer in the assessment. For example, I have no issue with making up an imaginative story on the spot, whereas another forum user refused to do this task. Thus Tiger1 I'm curious as to how individuals would know what's expected of them when we have all behaved in different ways?
As there isn't a set right or wrong answer to the tasks, plus the assessment is administered by a person who will have their own specific interpretation of the results, there are thousands of variables leading to a positive or negative result. As such, I agree with Christmas Cards that the test is very robust, plus its hard to influence the assessor and find it really difficult to see how the test can be 'faked'. As I've previously mentioned I was given a diagnosis before we'd even got to the task section of the assessment, thus, my answers to the 'test' weren't seen as important. I answered many of the tasks in a neurotypical way but my assessor understood that although I can do these things in test conditions it doesn't mean I don't have difficulties in these areas in the outside world when there are lots of distractions.
NAS50301 said: I answered many of the tasks in a neurotypical way but my assessor understood that although I can do these things in test conditions it doesn't mean I don't have difficulties in these areas in the outside world when there are lots of distractions.
I would think the quality of the assessor is variable. Some would understand , as your assessor did , and other's wouldn't .
Thank you. I must admit I'm in a bit of an "I don't know what to think anymore!" mood now.......I might try to explain better what I was trying to get at in the original post, or I might just leave it as I'm only a bystander expressing a note of caution which may or may not be unfounded. After all, I'm not an expert on these tests and it's not my job to protect their robustness :-)
I suppose it all comes down to attitude. Working in the field (I used to be next door to the SpLD assessors at work) meant my attitude was a lot more balanced as I know many disability assessments are just one person's opinion. Plus, as there are good and bad assessors everywhere what my assessor thought was less important than what I knew about myself. This was emphasised having worked somewhere were we have had to let ASC assessors go as their views were outdated and even when it was clear to everyone in the team a person was autistic they still said no and put it down to social anxiety.
I wanted the official piece of paper sating I was autistic to access the support mechanisms I need (RA, PIP etc) to manage being a minority neurotype. Thus, I'd have been ok if I'd have 'failed' the assessment and had to seek a second opinion. If you don't have this view and see that specific assessors opinion as the wholly grail then I can imagine how stressful the experience will be and how this would lead to significant anxieties around performance. As you mentioned earlier when you started to read posts that contained details you didn't want to know you closed that post. As adults, we have personal responsibility and if an individual doesn't want to know the details of an ADOS assessment it's up to them to protect themselves, such as avoiding forums until the process is over. I like that these boards enable to talk freely and would hate for us to move towards a dictatorship with their being restrictions on what people can and can't say.
Not pointless at all! I thought it was a good point. I can definitely see both sides to the argument. For those of us that have had it it is good and interesting to discuss. But I can definitely see the caution in posting what happens for those awaiting the assessment. I actually know someone awaiting the assessment, who acts like an idiot out in public then shouts at everyone that they have autism and expects people to then just go ahhh, that explains everything, here have everything you're demanding. If this person actually gets the diagnosis they are going to be a complete nightmare. I know this person is researching what they need to do for the assessment so it comes out 'mega autistic.' Which really relates to your original post. So it wasn't pointless to me at all!
Thank you :-)
Like you, I can see both sides of the argument. I'm struggling a little to pull out the key threads to try to make sense of it; I mostly like to think that where there is disagreement that there is usually either some common ground that hasn't been expressed clearly enough or there's otherwise some misinterpretation, or one or more people have made some untrue assumptions that haven't been flushed out (of course I could have fallen into these traps).
What is clear is that there are pros and cons to this, and I know that I valued not knowing the details.
NAS50301 raises an interesting point about free speech, and my gut reaction has always been on the side of those who say free speech has to be absolute or it's not free, but this again is a complex area and I'm no expert. I wonder if there's an analogy in the famous play "The Mousetrap" though?
To try to clarify *why* I valued not knowing about it in detail, there were things mentioned in my report that picked up on aspects of my presentation that I didn't know were being illuminated at the time and hence I can be confident that I was "being 100% me". But I guess that could also happen even if full details were published.
To find out for sure, you'd have to do some kind of scientific experiment with volunteers split into appropriate sections and some told full details and some not, i.e. repeat the tests they do for sensitivity and specificity with an inject of "knows details in advance" as a test parameter. I'm guessing that this has never happened nor is likely to!
I think there's a difference between knowing details , and when put on the spot being able to respond in a way that enhances the likelihood of a positive result . Especially in a situation where you're going to feel anxious and a little stressed.
I too valued not knowing. I had come across a thread in which it was briefly discussed when I was trying to find out just what an ADOS was. I didn’t want details but I just wanted to know whether that was used for everyone, how many people would be in the room and stuff. The only thing I saw was mention of a book without words, but not why what you had to do. I’m really glad I didn’t read further because I think if I knew what was going on even if I wasn’t doing it completely consciously I may not have answered so naturally. For me the five objects thing was really interesting. I had no idea at all what they were looking for and asked afterwards if my story was any good.
Mans a few other little bits that like you I had no idea about myself.
NAS50301 said: the test is very robust
It isn't that robust. I passed" the ADOS but got a diagnosis. It says on my report that ADOS isn't that effective for women.
NAS50301 said:Thus Tiger1 I'm curious as to how individuals would know what's expected of them when we have all behaved in different ways?
I agree there are two sides to the debate or even three. How would you feel about doing an assessment where you knew all the candidates knew all the answers and all the tests?